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Beacon Stories
“My husband and I have not been able to be significant Foundation supporters during our lifetimes,” she said, “but I would be honored to leave this gift as part of my legacy.”
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Beyond Labels: The Inspiring Journey of a Refsum Disease Advocate
Beacon StoriesAfter years of seeking answers, Alan Gunzburg was formally diagnosed with Refsum disease, a rare genetic disorder. Drawing on his unique journey, Alan sheds light on the obstacles he’s faced and how his experience motivated him to make a positive impact in the lives of others.
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Eye on the Cure Podcast | Episode 48: Jami Kern, PhD
Eye on the CureJune 16, 2023. Jami Kern, PhD, chief clinical officer at Nacuity Pharmaceuticals, talks with host Ben Shaberman about NACA, the company’s emerging gene-agnostic therapy for Usher syndrome and retinitis pigmentosa in a Phase 2 clinical trial in Australia. Their conversation includes a discussion about oxidative stress, which NACA is designed to mitigate, and timing for the efficacy readout from the Phase 2 study.
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Beacon Therapeutics to Advance XLRP, Cone-Rod Dystrophy, and Dry AMD Gene Therapies
Research NewsAn emerging XLRP gene therapy acquired from AGTC is the company’s lead clinical program
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The Retinal Research Community Mourns the Loss of Retinal Research Pioneer Thierry Léveillard
Beacon StoriesDr. Léveillard helped discover and develop a gene-agnostic, cone-preserving therapy for retinitis pigmentosa that’s moving into a clinical trial.
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Eye on the Cure Podcast | Episode 47: Kari Branham
Eye on the CureJune 2, 2023. Kari Branham, a genetic counselor with Kellog Eye Center at the University of Michigan, talks to host Ben Shaberman about a variety of topics related to genetic testing and counseling for people with inherited retinal diseases. Their conversation includes discussion of: common misconceptions about genetic testing, variants of unknown significance, when re-testing makes sense, and when and if family members should be tested.
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Coave Reports Encouraging Phase 1/2 Clinical Trial Results for PDE6B Gene Therapy
Research NewsThe company is expanding the trial to enroll younger patients with less advanced disease
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Wellness
Eric Ringham is a retired senior editor at Minnesota Public Radio News, where he supervised arts and education coverage. Before joining the MPR staff in 2009, he completed almost 30 years at the Star Tribune in Minneapolis, serving most of that time as commentary editor. Ringham also works part-time as a voice and stage actor. He and his spouse, Ann Wagner, live in south Minneapolis.
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Summary of the Eighth Annual Retinal Cell & Gene Therapy Innovation Summit 2023
Research NewsThe Retinal Cell and Gene Therapy Innovation Summit has emerged as one of the most essential events for researchers and companies developing treatments and cures for retinal degenerative diseases. In its eighth year, the Innovation Summit featured 30 presentations from retina experts from around the world with more than 300 people in attendance.
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I Am Blind, but I Am Not the Blindness
WellnessDr. Ann Wagner is a Board-Certified Clinical Psychologist who has worked at the Minneapolis VA HCS for the past 23 years, serving veterans and their families. She works primarily on the PTSD Clinical Team providing evidenced-based assessments and interventions for PTSD and other trauma-related problems. Dr. Wagner herself is legally blind due to retinitis pigmentosa.
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